DISABLED--PLEASE GIVE ME ADVICE ON WHAT I CAN DO!!!

[cincydarryl]

Yes...it is. Doc is brilliant! He was the 1st and only Dr in many years that was able to figure it out. He was the 1st to suggest an audiologist check my hearing (I have hearing aids now); and he was the 1st to suggest that I should get a sleep study done (my severe sleep apnea was found); and, now I'm hoping he can figure out this thing!
The 1st sleep center didn't even check for N and it took me changing centers to find out that I have it! And, I've had to change centers again to get away from the Xyrem! It would have killed me.
So here I am...off all night/day meds completely. None worked and none left to try. Done them all and only had bad reactions to all of them.
I am interested in what you have to say about the testing.
Thanks!

[Countingsheep]

If it's the same testing I had, it was a LONG and ARDUOUS (is that a word?) test. I know some places spread the test over days. I did it at the Mayo Clinic, and it was six hours of testing (with an hour break for lunch and sleeping on a bench!).

You will be in a room with a person asking you questions which are kind of like school stuff again. They give you lists to memorize, show you pictures then ask you what you remember, tell you stories and ask what you remember, do basic math, blah blah blah. Supposedly, they can test different areas of your brain functioning. There is a neuropsych doctor watching behind a camera.

I thought I was having major memory problems, but the test showed it wasn't my memory at all! It was actually my "processing". Therefore, when I wasn't remembering something, it was because it wasn't even getting processed into my brain correctly. And, of course, they said it was probably due to my fatigue!

I don't know if this test really diagnoses an issue, but it can certainly document if you are having cognitive problems from some other issue... Unfortunately, if they don't have a base line from your "healthy" days, they may not know if something is abnormal. I have an MBA from a top-10 school, and graduated high school and college with an A average. However, the test doesn't show my past success. The doctor wrote something obnoxious about my 'claimed' success, and his doubts about it. It kind of pissed me off...

Anyhow, let us know how it goes. Get a copy of your report, as it can be strong evidence for your disability.

[cincydarryl]

I had this test done in 2004 and it showed I remembered 10% of what normal folks did at my age (at the time-51). This is for a baseline comparison from 2004, to see if it's getting worse.

I don't have blackouts, but I do 'blink-out' a lot. My short-term memory is disappearing very fast! I can be doing something, turn around and then not remember what I was just doing. Most of the time, all it takes is to move my head away from what it was that I was doing, and it's gone.

But lately, periods of time have just gone missing. I'm in the shower one moment and the next I'm drying off. Now, that is startling!

Yeah, I had this test before and it is taking 2 days to complete. This last Thursday, then next Friday. The following Friday I will get the results.

The Doc doing the test is brilliant and was the 1st to suspect a sleep problem. He told me I needed to get another MRI. I had them done in 2003 & 2004, but it was done for possible MS, since I have a brother with it. No MS found.

I really appreciate the dialogue! There are no N support groups in Cincinnati that I can find, so this is all I can do.

[Countingsheep]

cincydarryl, I've had the short term memory issues like that. I would get lost in my house. I couldn't read a sentence and remember what the whole sentence said. I'd pick up something, and be surprised when I saw it in my hand. And I'm only 38!

It's usually only this bad when I'm really sleep-deprived (you know, trying to function on 7-8 hours of sleep ), or from problems with the stimulants.

The test showed I was at the 10th percentile for a 12th grader. That was on a good day. Nice, huh? Especially for someone who still knows I have my brains somewhere inside my head...

[cincydarryl]

That's what I'm like every day...

I'm having a harder time putting in a full day at work. Barely 7 hours a day now. I can't leave home 'til I wake up enough to get into my car a drive...then if I don't leave work by 5pm, I start running the risk of getting into an accident while stuck in rush hour traffic.

I worked later last night at work ('til about 6:30pm) and was scared to death of the traffic. I've had some close calls in the past and it scares the Hell out of me anymore. I have to psych myself up so much, to stay alert, that I'm exhausted by the time I get home. Sometimes 1.5 hours later.

I had to work this morning for a few hours, and thought I was pretty wide awake on the way home, but not 5 minutes after leaving work, I had difficulty changing lanes, 'cause I couldn't remember if anyone was in the lane next to me. I looked, but kept forgetting what I saw!

Geesh! This is crazy! Driving is getting to be something that I hate to do anymore. Usually, it's only after about 20-25 minutes that I get tired, but that 'cushion' time is getting shorter. It took me over an hour to read 10 pages from our company policies book tonight. I kept forgetting what was on the prior page, to make sense out of what I was reading currently.

Oh, well...hope you are doing ok. I've seen you on this forum for some time now. Besides the obvious, how are you?

[Countingsheep]

I've been posting for a long time now, haven't I? I also spend a lot of time on the disability thread, as this is a near-and-dear issue to me.

WORDS OF CAUTION... document each day right now. Just in case your health forces you to stop working, it is a good idea to have everything documented. Some day, when a judge looks at you with an accusing voice says, "so, why'd you stop working?" you'll have it all written. Especially if it's effecting your job performance, and there is any documentation of your decline at work.... get it all in writing.

I have some documentation of my secretary getting cabs for me, as I was afraid to drive the 15-minutes to my job. I was falling asleep after less than 10 minutes behind the wheel. SCARY SCARY stuff.

By the way, do you exercise? I've found that forcing myself to do some cardio and strength exercises has made a huge difference. It's HORRIBLE getting motivated, and it's not the full answer, but it really does help...

[cincydarryl]

Y'know...I plan to keep a daily journal every day...but I forget until it's too late in the day and I'm tired already...
I will keep that advice in mind and try to do a better job of it.
Thanks!

[Countingsheep]

Would you like a copy of a sample sleep diary? I used to send it on to a lot of people from these boards. I made a blank copy. It's an excel file that links your sleep hours to a graph, and gives you a place to enter symptoms. It would save you some work...

Let me know, and I can e-mail it to you.

[cincydarryl]

Yes, I would! Anything to help make it easier to do it.
Thank you.

[Countingsheep]

I just sent it on!